The articles in this supplement represent presentations and discussions at the “International Workshop on Adolescents and Young Adults with Cancer: Towards Better Outcomes in Canada” that was held in Toronto, Ontario, March 11-13, 2010. Workshop on Adolescents and Young Americans with Cancer: Towards Better Outcomes in Canada, Supplement to Cancer.

Palliative care has been described as the multidisciplinary care of patients with incurable or life-threatening illnesses. The purpose is to control symptoms and relieve physical, social, psychological, and spiritual suffering.1 The World Health Organization (WHO) expands this definition for palliative care in children to “the active total care of the child's body, mind, and spirit, and also involves giving support to the family”.2 Modern palliative care has evolved as a specialty since Dame Cicely Saunders established the St. Christopher's Hospice in London in 1967. The first Canadian palliative care units were developed in Winnipeg and Montreal in 1974/1975. Palliative care originally referred to “end of life care” but is now more commonly accepted as treatment to relieve emotional and physical suffering which may occur at any stage of the disease. Although such symptoms are more common in patients with advanced cancer they can occur at any stage of the disease and referral to palliative or symptom care services is often appropriate for patients who are still being treated with curative intent.

Pediatric services typically care for patients under the age of 17 to 18, whereas adult services care for all patients above this age. Although the AYA age group was not clearly defined in this workshop, for the purposes of this discussion paper it includes patients aged 15 to 25 years. Death from cancer in adolescents and young adults (AYA) is relatively rare compared with older adults and consequently the average age of patients in adult palliative care units is 60 to 65 years.3 It is recognized that AYA with terminal cancer have distinctive needs which may not be met by either the pediatric services which focus on younger children or the adult services which are predominantly geared toward older adults and seniors. The AYA population may straddle both age groups depending on maturity, stage of disease, symptoms, support systems, and culture. The purpose of this review is to identify the particular needs of this population and to discuss potential barriers and solutions to improvement of care in the context of palliation and symptom management.

A “breakout” discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11 to 13, 2010. The discussion was moderated by the authors with input from a variety of stakeholders including cancer survivors, caregivers of terminally ill AYA patients, and multidisciplinary healthcare providers.

The “tasks” assigned to the group at the start of the workshop were to identify key issues and priorities and to consider how they should be addressed, to provide justification for change and to explain how this would benefit patients and the healthcare system as well as to describe the barriers to change

Discussion within the breakout group centered on several themes that can be grouped together as follows: 1) Psychosocial needs of the patient, family, friends, and caregivers; 2) Transition to palliative care—when, how, where?; 3) Resources required. that is, patient, family, healthcare system; and 4) Advocacy.

Psychosocial Needs: Patient

The emotional and social needs of AYA patients with a terminal illness are complex and vary considerably, depending on the level of maturity of the patients and the extent to which they have made the transition from complete dependence on parents and family to independence.4 Severe illness often results in loss of newly gained independence and the patients again find themselves dependent on their parents for physical, financial, and emotional needs. This can place significant stress on relationships.

Peer support is crucially important at this stage of life. AYA patients being treated for cancer often feel isolated from their regular peers at school or work because of their illness. Important social support is often provided by other AYA patients of a similar age being treated for cancer. The process of transitioning to palliative care, however, may again isolate AYA patients from their new peers who are still on a “curative path.” Reasons for this secondary isolation include the difficulty in accepting the possibility of death as well as practical problems such as the transition to home or hospice care.

Psychosocial isolation is debilitating for AYA and facilitating peer interaction is an extremely important aspect of their care. One possible solution to counteract isolation is the development of a physical space within the hospital, outpatient clinic, or hospice that is conducive for social interaction. Such a space should be inclusive of the AYA patient's friends and family. Alternative solutions include access to web-based peer support programs and social networking sites. Internet friendships can be developed and maintained throughout the continuum of oncology care. These “virtual” friends can be a major source of support, especially for patients with deteriorating health who cannot easily socialize outside of the hospital or home. It may be possible to develop friendships with other AYA who are also facing a terminal illness, even if it is due to a different disease, either within the hospice or by means of the internet.

Professional psychosocial support is also very valuable, and it is important to include psychologists, youth workers, music therapists, social workers, and other supportive care workers within the palliative care team. Grief is experienced throughout the illness trajectory. Grief is exacerbated as multiple losses are encountered and the anticipation of end of life is considered.

Psychosocial Needs: Family and Friends

Families and friends of AYA patients often have considerable psychosocial needs that may go unnoticed. Family and close friends start to grieve the loss of their loved ones long before they actually die. Benefit can be derived from regular counseling support and may be most beneficial when initiated at early stages of the disease. This may enable the family to provide more support for the patient as well as help ease the family's return to “normal life” after the patient's death.

Canada is a multicultural society, and many cultures have deeply ingrained beliefs and cultural behaviors surrounding death. Understanding the cultural setting can help healthcare professionals facilitate the care of a patient and support the family. It should also be recognized that generational differences in beliefs may exist between patients and their families. Skilled psychosocial and spiritual care workers can be valuable assets to palliative care services striving to provide culturally sensitive care to patients and families.

Psychosocial Needs: Professional Caregivers

Psychosocial needs of the healthcare professionals should also be considered as it is recognized that there is a high rate of “burnout” among palliative caregivers. Support from colleagues and the opportunity to share the responsibilities and challenges of difficult cases is most important.5 Possible solutions to promote sustainability and staff retention include improving peer support by “normalizing” debriefing and having regular opportunities for acknowledging losses. Staff should be encouraged to develop their own personal support systems and to maintain a sense of balance between work and home life - often very difficult with a demanding workload. Palliative caregivers should be trained to recognize stress in their colleagues and in themselves and should know how to intervene if necessary.

The transition from treatment with curative intent to treatment that is life-prolonging or primarily for symptom management may be gradual or sudden. A common theme is how and when palliative care should be discussed with the patient. It is recognized that health professionals may have many reasons for avoiding or delaying this discussion, including not wanting the patient to think that they are “giving up” and concern that the patient may lose all hope. Likewise patients may avoid this discussion because they may fear that it would precipitate discontinuation of active treatment or they may want to protect their families from the acknowledgement that they are dying. This lack of communication about illness trajectory and potential outcomes is often rooted in a desire to protect others from distress; however, the resulting “conspiracy of silence” can be a significant barrier to transitioning to a palliative approach and appropriate comprehensive care.

A possible solution to help identify AYA patient readiness to discuss palliative care is to initiate routine and regular screening for anxiety and psychosocial concerns by using a standardized questionnaire. An example of a palliative care needs assessment tool has been developed recently in Australia to facilitate early intervention and improve quality of life.6 This could be used routinely from diagnosis and throughout the continuum of care to identify trends in anxiety with prompts to offer psychosocial support. This may help initiate these difficult discussions without the need for the patient to begin the conversation. Screening questionnaires can also be used for early detection of other symptoms such as pain, nausea, or sleep disturbance.

Members of the palliative care teams frequently have specialized expertise in pain and symptom management. Concurrent involvement of this team (alongside the primary oncologist) in AYA cases in which complex symptom management is paramount to the clinical care of the patient should preferably occur before the AYA patient is officially deemed “palliative”. Such early involvement not only facilitates achieving optimal symptom control during active treatment phases but may also help in later transition to palliation when required. The WHO definition of palliative care in children specifies that it begins when illness is diagnosed.2 Two recent studies have demonstrated that the term “palliative care” can act as a barrier to early referral because of the perception of decreasing hope and causing distress to patients and families.7, 8 Other terms such as “supportive care team” or “symptom management team” can be used and are more likely to result in earlier referral or referral of patients who are still receiving treatment with curative intent.8 It is imperative that the referring practitioners, patients, and families are educated about the expanded role of the palliative care team, and do not just identify the term “symptom management team” as a pseudonym for terminal care.9, 10

Effort should be made to “normalize” involvement of the palliative care/symptom management team to help with symptoms such as pain throughout the course of the patient's illness without the negative connotations of terminal care. This obviously has implications for resources as it is not realistic in most hospitals for the palliative care team to help manage all symptoms for all patients. Local guidelines for involvement of the palliative care team should be developed to ensure the most efficient and effective use of that team.

Health care in Canada is traditionally divided into pediatric and adult care that are often located in different hospitals and managed by different healthcare teams. Continuity of care and smooth transition of care is important in any illness, and is of crucial importance for palliative care.1 An AYA patient may start treatment in a pediatric center but at the time of transition to palliative care may have outgrown a pediatric hospice either chronologically or in emotional maturity. However, an adult hospice is usually populated by older adults or seniors and is not an ideal environment for a young adult. Adult palliative care teams often find the relatively uncommon experience of caring for young adults distinctly challenging as there is a perceived sense of unfairness in the early end of life circumstances for patient and family.

Ideally, a designated facility and team should be created for palliative care of the AYA population with special attention to the emotional and physical requirements of this age group. However, it is recognized that this would be expensive and out of reach for most communities. A possible solution is the creation of a flexible multidisciplinary palliative care team with extra training in the needs of the AYA patient. This team could provide support within both the pediatric and the adult facilities, as well as support for home care. It should provide the bridge between the pediatric and adult healthcare institutions as well as the bridge between curative and palliative care. It may also be possible to create physical spaces within existing hospices that are more suitable for AYA patients. Such areas within a pediatric hospice could be used for the young adult who is not emotionally able to transition to an adult hospice at such a difficult time.

Patients not living close to a major cancer center are not likely to have regular in-person access to a specific AYA palliative care team. With existing technology like web cams and video conferencing software such as Skype, it should be possible for the AYA palliative care team to interact with patients at home or with healthcare teams in local hospitals or community based palliative and home care services to offer advice and provide a “virtual” AYA palliative care team in almost any environment. This approach acknowledges that many AYA patients accept technology as a normal means of communication. Funding for such a program may be a potential barrier, but if properly designed and maintained it may save money by enabling patients to stay at or closer to home for longer with the knowledge that advice and support is easily available.

Patient and Family: Resources Required

Many young adults have already left their parents' homes and may be studying or working a great distance away from their parental home when they are diagnosed with cancer. Cancer care is expensive, and most young people do not have extended healthcare plans or disability insurance. Often they have to give up their jobs to concentrate on their health care. Frequently in this situation AYA patients return to being dependent on their parents, placing a huge economic burden on both the patients and their families. This problem is magnified for the patient in palliative care who may need constant care by family at home, usually requiring 1 or both parents to stop working.

Dying at home is the preferred choice of most patients.11 This is relatively inexpensive for the healthcare system because most of the care is provided “free of charge” by the family. One barrier to patients being cared for by family members and dying at home is that the “Compassionate Care Benefits” provided by the Canadian government only allow for a combined total of 6 weeks of benefits to be paid to family members of a terminally ill person.12 This is insufficient for most young patients dying of cancer, in whom illness trajectory can be unpredictable and the terminal phase of an illness can extend over many months. A solution to this problem is to extend the compassionate care benefits to allow more patients to receive care at home, ultimately resulting in savings to the healthcare system by avoiding hospice or hospital care. Palliative care patients who are cared for at home should also receive necessary drugs free of charge, just as they would if they were in hospital.

Health Care: Resources Required

Substantial resources are required on multiple levels to provide a comprehensive, multidisciplinary palliative care and symptom management team. Such teams may consist of a physician with expertise in palliative care, a specialized nurse, a social worker, a youth worker to facilitate social activities, a psychologist, and other team members as necessary.1 Care may be provided in a hospice, a hospital or at home. Regardless of the site of care, the caregivers should have expertise in palliation and symptom management, as well as the special needs of the AYA patient. Unfortunately, most centers do not have a sufficiently trained AYA team and, in times of economic restraint, cutbacks may be more likely to occur in palliative care than in acute care services.

Evidence-based guidelines for palliative care specifically for AYA are limited and in need of development. We recommend that minimal standards for AYA palliative care be clearly defined to allow measurement of the level of care needed and provided. Outcome metrics need to be incorporated to validate that changes made are effective. Quality of palliative care provided to AYA patients should be incorporated into accreditation standards for hospitals that would facilitate appropriate financial support from healthcare budgets.

Many hospices depend on donated funds for provision of services, but again these funds are vulnerable to economic downturns. We recommend that palliative care should be included within core healthcare funding, in view of the pervasive impact of life-limiting illness on patients, families, friends, and care providers, and the moral imperative to support those in such vulnerable circumstances.

Other solutions to increase resources include extending the scope of palliative care teams by the use of newer communications technology to provide advice directly to the patients in their homes or hospitals, or to provide assistance to the caregivers in the community. This would enable specialized palliative care teams to be established in tertiary care centers while their expertise could be shared with a whole healthcare region.

Patients in palliative care are often too burdened by their illness and do not survive long enough to advocate effectively for system change, and therefore must rely on others to advocate for them. Families are frequently exhausted and consumed by caregiving needs during the illness, and following the death are grief stricken and want closure. There is a lack of awareness of the special needs of the AYA population among healthcare professionals and those responsible for healthcare policy.

Possible solutions include developing strong advocacy groups from grass roots organizations, for example, Young Adults with Cancer in Canada (YACC). It is recognized that most young people who have had cancer have considered the possibility of death and may be in a strong position to advocate for the provision of comprehensive palliative care. Healthcare professionals are required to advocate for the needs of this population and to increase awareness within hospitals, communities and government.

Adolescents and young adults with cancer should have access to palliative care services to support and relieve physical and emotional suffering from the time of diagnosis until the time of death or cure. It is expected that, if the patient and family are supported, and symptoms are managed appropriately, there will be less co-morbidity for the family and caregivers who will be able to return to family and work life more easily. Specific recommendations are as follows:

1)

Develop a specific AYA screening tool to detect increased anxiety and new medical concerns to help initiate discussion about palliative or symptom care.

2)

Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation.

3)

Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death.

4)

Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible, can work in both pediatric and adult facilities, and are able to work in a the home or in a “virtual” environment to support patients being cared for at home.

Adequate provision of AYA palliative care and symptom management services will confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers.

Funding for the National Task Force on Adolescents and Young Adults with Cancer has been made possible by a financial contribution from Health Canada through the Canadian Partnership Against Cancer. Funding for the workshop was provided by C17; the Advisory Board of the Institute for Cancer Research at the Canadian Institutes for Health Research (CIHR); the Public Health Agency of Canada; the Ontario Institute for Cancer Research; the Meetings, Planning, and Dissemination Grants program of the CIHR; the Terry Fox Research Institute; LIVESTRONG, formerly the Lance Armstrong Foundation; the Canadian Cancer Society Research Institute; Young Adult Cancer Canada; Hope and Cope; and the Comprehensive Cancer Centre at the Hospital for Sick Children, Toronto, in addition to the support provided by the Canadian Partnership Against Cancer to the Task Force on Adolescents and Young Adults with Cancer.